6 Things To Never Say To An Autism Parent

 

Over the years I’ve heard it all, from “Are you sure she has Autism?” “..but, she seems so smart.” and my favorite, “I’ll pray for you.”. No matter how much time passes, it never fails, someone unintentionally (I assume.) rubs me the wrong way. Instead of getting mad, and wasting my energy on people’s ignorance, I chose to put together a few comments and suggestions I could do without. However on the flip side, I do understand that a majority of people don’t realize they’re being rude or hurtful. And my only hope is that I can help clear up why some of these seemingly innocent remarks can be hurtful. Behold, 6 things you should never say to an autism parent-ever.

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“I’m Sorry.”- The last thing you want to hear upon telling someone your child has autism is, “I’m sorry.” While it may be an understandable and honest reaction, it’s extremely hurtful. Saying you’re sorry about my child is like saying there’s something shameful about having autism. Or that you pity me because ‘unfortunately’ my daughter has autism. I assure you we are extremely proud of our daughter. The only thing I’m sorry about, is that the world can’t be a more understanding and accepting place for her and others alike. Instead of apologizing for my child’s existence, try engaging differently. Asking questions and showing genuine interest won’t offended anyone, I promise. You can ask about their child’s interests and what autism means for their family. If ASD isn’t something you’re familiar with, let them know. This can be a learning experience and doesn’t have to be awkward.

“I Don’t Know How You Do It.”- This bothers me for numerous reasons. Mainly because it’s offensive. What I hear is that you pity me for being subjected to ‘unimaginable’ circumstances, when truthfully if faced with the situation, you too would rise to the occasion. Everyone thinks they aren’t capable until it happens to you. So telling me how I’m a super mom because I manage to love and support my kid, who happens to have autism isn’t a compliment. And I know this comment is meant to praise me on how ‘hard’ things appear and at times actually are, just know it doesn’t sit well. I don’t want my child to be made to feel like some burden on me, when that’s the furthest thing from the truth.

She’ll Eat If She Gets Hungry Enough.”- Actually she won’t. This is so frustrating for so many reasons. A lot of people aren't aware that autism usually comes with some co-existing conditions, like sensory processing disorder. Every meal is either a struggle, a pleasant surprise, or me begging my child to swallow her food or eat. Unless you’ve had to have your child on a specialized diet, or your child has an extremely limited diet, or your child is unable to feed themselves independently, you just don’t understand the heart break. Take a second to imagine having to watch your child’s weight drop drastically, endure G.I. issues daily, or seeing your child struggling to swallow their food, and gagging while trying to eat. I know your advice is meant to helpful, but know it’s just extremely frustrating.

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“She Doesn’t Look Autistic. Are You Sure?”- This is the most common response I receive after telling someone my daughter is autistic. “She seems normal to me.” Let me break this down for you. Telling me my child doesn’t ‘look autistic’ for one is a back handed compliment. This isn’t a compliment. I repeat THIS IS NOT A COMPLIMENT. Besides clearly having an extremely narrow view of what it means to have a disability (an invisible one at that.), you’re completely minimizing a person’s autism. You’re minimizing the hard work it takes to ‘appear normal’ to you. Please don’t minimize my child’s autism. It has taken many years of trial and error, a series of therapies, and an ocean of tears to be where we are today. Receiving a diagnosis isn’t as easy as you’d think because autism is such a vast spectrum. Some people have spent years just to finally receive a diagnosis and support. Autism is every day. There is no off switch, just better days than others.

“She’ll Talk When She’s Ready.”- This has always been painful to hear, especially knowing a large number of people with autism are non-verbal. Coming to terms that you might not ever hear the words ‘I love you.’ or ‘mama’ is tough. It’s something most parent’s won’t ever have to think twice about it. It’s the kind of thing you just have to take one day at a time. Now imagine strangers and family members in denial of your child’s autism, bombarding you with unsolicited advice. The uncertain future is hard enough to combat, the last thing I need is someone chirping in my ear, “Don’t worry she’ll start talking when she’s ready.”

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“She’ll Grow Out Of It.”- No, no she won’t. And that’s okay. I understand people say this for numerous reasons. Either they don’t understand autism is a neurological disorder that generally comes with other co-exsiting conditions, or they’re in denial. Not that children on the spectrum can’t flourish through therapies and hard work, but overall these services exercise and better a person’s the ability to cope, resolve, and redirect in an appropriate way. You can’t cure autism and you can’ just re wire someone’s brain to work a certain way. Autism doesn’t just vanish, so when you ask me “Is she still autistic?”, you’re essentially wishing away something very much apart of her whole being. I don’t love that my child has autism, but I do love my child as a whole.

 
 

Progress and Acceptance

 

Olive’s last I.E.P meeting went really well. I went fully prepared for the daunting task of reviewing all her areas of struggle. I normally dread these meetings just for the fact I generally leave feeling upset, facing just how far behind she truly is. This one was different. I was told she was doing wonderful. In areas like math she was at the average percentile. Since school started there has been no issues with transitioning classes, or changing activities. She’s been playing well with others and appropriately. She is making friends! There has been no meltdowns, and she seems genuinely happy to be there. To my surprise they decided to remove behavioral therapy from her I.E.P, they see no reason to continue when she has been doing so well. Olive now also spends about 90% of her time in the classroom being amongst her peers. It was so hard not cry tears of joy upon hearing the great news. She will now be primarily focusing on speech, language skills, reading, and occupational therapy. Olive was non-verbal for most of her life, and has delays in certain areas of speech. This past year, more than ever we’ve noticed her speech being ‘normal’ one week, then kind of become jumbled by the next. She has a hard time with ‘Th’ and “S” sounds. She also will sometimes pronounce part of a word- leaving off the ending sound. But so far she’s moving along at a steady pace, continuing to engage, and make the most out of her therapies.

Yesterday I was at the grocery store, and struck up a conversation with the cashier. We were discussing the outrageous costs of therapy, and medications. She had explained to me how her daughter has a condition with her thyroid, that also effects her brain. She has to take medication daily to keep her well and functioning. The medication unfortunately is very expensive. As we wrapped up our conversation, I turned to leave and another cashier approached me. She told me her sister has Autism. And then proceeded to tell me how smart and talented she is. She told to me about her sister’s Etsy shop and the beautiful things she knits. She shared how excited she was for sister to finish knitting her Christmas gift. I couldn’t help but to feel compelled to cry as I watched her face light up, as she told me her sister was only one semester from receiving her masters degree. I see her eyes begin to water as she tells me how proud her and her family are. I at this point have become completely moved by the out pour of love and admiration she has for her sister. It took everything in me to not cry. As I walked out the store and then to my car, I finally let myself feel. You’d think after 4 years I could carry a conversation about Autism without it hijacking my emotions mid sentence. I came home and cried some more. I wasn’t sad or even reflecting on my own situation. I was just genuinely happy to hear someone with Autism happy, thriving, and appreciated.

That’s something I’ve noticed in this journey as time goes on, it’s become less about how to ‘fix’ my child and more about promoting acceptance and awareness. It’s celebrating the little things, and finding joy in another person’s accomplishments, regardless of what your personal situation is. In the beginning I would feel jealous and even sad when I’d see other children doing so well. I stopped comparing my child to other children and stopped being bitter. Everyday I would feel hopeless when I thought about the unseen future that lies ahead. Instead I started taking one day at a time, and choosing to be happy. Yesterday was so much more than just being moved by someone else’s story. It showed me how far I’ve come in my own personal journey of acceptance. I’m not happy my child has Autism, but I’m not angry anymore either.

 
 

Dear Parents, You Are Human

 

Parenting is no easy feat. It’s messy, unpredictable and at times exhausting. Throw in Autism and a couple co-existing conditions into the mix, chaos is inevitable. No one quite understands the long sleepless nights, the random spouts of aggression, witnessing your child struggle daily, the endless list of appointments and therapies, or the fear you carry daily about your child’s future. The weight of all the hard questions with no concrete answers, can leave you feeling drained or even angry. It’s okay to admit that Autism is hard and you feel you are at your wits end. Your harsh and honest feelings in no way over shadows your love for your child. You are still a good parent. You are allowed to have bad days where you just want to curl up in bed and cry. You’re allowed to feel a vast array of feelings without guilt. There’s nothing easy about Autism, for your child or for you. Ignore the sugar coated social media posts, and remember these people are only choosing to show the positive aspects of their lives. No one’s life is perfect, and no one has it all figured out. We are all just doing the best that we can, and praying for a good outcome.

A lot parents carry guilt for harboring feelings of sadness or anger in regards to Autism. As if you’re not allowed to feel drained after a meltdown, or you shouldn’t be upset when your day turns sour due to a sensory overload, or you that you don’t need time to decompress yourself. None of this true, you’re allowed to feel. Your love for your child doesn’t diminish because you are feeling angry about your child’s epilepsy or over whelming sensory issues. You can feel that way and still love your child more than life its self. You can still be a loving parent and feel sad about the tough stuff, because after all you are human.

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Take your pain, and your overwhelming sadness at the moment and face it. It’s okay to be mad or even angry, but don't dwell on it too long. Recognizing your emotions isn’t the problem. It’s what you do with your feelings and how you express them that matters. Darkness tends to spread rapidly inside us at our most vaunrerable moments, causing us to sometimes get stuck in the dark. Acknowledge it, wallow in it as long as you need to, and then leave it behind. There is no heavier weight to carry than anger, resentment, and sadness. It will weigh you down, and wear you out, until there is nothing left. And honestly I’ve felt that way myself more than once. It’s not an easy hill to climb, and takes time to come back from, but it’s not impossible. A great parent never gives up, even when faced with the seemingly impossible. Accept your feelings for what they are and then move on. Work through what you’re feeling whether that be through talking with a friend or counselor, or just writing down how you’re feeling at the moment. Don’t just leave it to settle and fester within you. Don’t get left in the dark. And most importantly don’t miss out on the amazing child in front of you because you’re too busy being mad about something you have zero control over. LET IT GO.

 

Disability Awareness

 

At the end of the day all children want to be understood and accepted. They want to be included and be amongst their peers. Children are both curious and observant. As parents, it’s our job to nurture our child’s curiosity, and to teach them about the world around them. We attempt to model kindness in hopes of fostering compassion and empathy in our children. We continuously preach the importance of sharing, and how to treat others. What happens when one your child’s questions are directed towards a person with a disability? Time and time again, the response I see most is a parent scolding or silencing their child on the matter. By not answering the questions or responding in a negative way, you are giving off the impression that there is something shameful or wrong with having a disability. I encourage you to use this time to teach your child about disability awareness.

Disability awareness is the educating of others on disabilities and impairments. It also includes providing the proper support and information for a person with a disbaility to efficiently carry out a task or job. The ADA has created several regulations including laws that require buildings to be wheel chair accessible, requirements on ADA braille signs, and making discrimination against someone with a disability unlawful. 1 in 20 children have a disability. This means there are millions of people who are vision, hearing, or speech impaired. Or have a developmental or intellectual disability. Society has come far in the accommodations for those who have a disabilites, but still have far to go in the acts of acceptance and employment. Help break down the stereotypes and misconceptions that follow those who have disabilities, and have the conversation. Unsure where to start? Here’s 5 tips on explaining disability awareness to your child.

  1. Use Correct and Respectful Terminology: When your child begins to ask questions or has made a remark about a person who has a disbailty, it’s important you address the remark. When speaking to your child make sure you are being straight forward and matter of fact. Always be sure to use appropriate terms, and stray away from outdated terminology. The use of words like retarded, wheel chair bound, handicapped, hearing impaired, the disabled, and cripple are equally offensive and out-dated. Using a ‘person first’ language is widely accepted within the disabilities community. Some examples would be a person hard of hearing, a person who is intellectually disabled, a person with a disability, or a person who uses a wheel chair. Be sure to speak in a positive manner when explaining that people have different needs. And make sure they understand there is nothing wrong with being different.

  2. Explaining Wheel Chairs: When children first see a wheel chair they are understandably curious. What is that? Why can’t she walk? Is he sick? This is when you need to explain that a wheel chair is a means of helping a person get where they need to go. Sometimes people aren’t able to walk well or at all. A wheel chair is a means for a person to be independent and without assistance. Children commonly assume a wheel chair means someone is sick or hurt. Explain that they are not ill, and once again a wheel chair is a means of getting around efficiently. It’s easy to assume a person might need a helping hand, but before you jump up to assist your friend- ask first. Be sure to make eye contact or get on eye level with someone who is using a wheel chair. Things like leaning or hanging on someone’s wheel chair is unacceptable. remind your child that a wheel chair is NOT a toy. Do not attempt to navigate a person, unless they’ve requested your help. If you’re unsure if you should assist a person, just ask. No harm done. What it comes down to it be respectful, always ask first, and make eye contact.

  3. Be Straight Forward and Positive: When explaining to your child about someone who has special needs or a disability it’s important to explain yourself in a matter of fact way to prevent any room for misconceptions. Talk to your child about how some people have different needs, and emphasize the importance of being kind to all. Encourage them to make friendships with those who appear different or look like they need a friend. I am by no means saying that you are to tell your child who to be-friend. What I am saying is emphasize the importance of inclusion and give them a positive sense of others who appear different.

  4. Answering Your Child’s Questions: Realistically it’s impossible to know exactly what to say when your child comes at you with an unexpected question. Here’s a few examples to help fill those blanks.

    Example:
    Your child asks why someone is in a wheel chair. You can respond that she uses a wheel chair because it makes it easier for her to get around. Sometimes people aren’t able to walk or have trouble walking, and this is way for her to do that easily. Plain and simple.


    Example: Your child notices someone is non-verbal and asks why. Talk to your child about how everyone is different and unique. Explain how people have different ways of communicating. And that just because they don’t speak doesn’t mean they are not able to hear or understand what you’re saying. There are numerous ways of communication that aren’t verbal. People communicate through body language, eye contact, stimming, facial expression, tone, sign language, computer generated speech, assistive communication apps, and more. And lastly non-verbal does not mean stupid or that an individual has a low I.Q.

    Example: Your child asks about the behavior of a person who has Autism. At this point your child maybe confused and making all sorts of observations. Understand they are curious and are probably waiting for you to respond or react. Firstly, SMILE. Then proceed to tell them that some people interact and feel things differently. And that this isn’t wrong or bad behavior. You can mention how sometimes people have certain sensitivities that cause them react in a ‘different’ way that their used to. And thats okay! You yourself can break the ice by saying hello and greeting them, just as you would anyone else. If your child asks about someone wearing noise canceling head phones, you can just easily explain how they may have sensitive hearing. And with the help of noise canceling head phones, it lets a person be able to focus and not become too overwhelmed. Be sure to mention that someone can still hear you while wearing their headphones. This is a common misconception that leads people to not interact with those wearing them.

  5. Bullying: It’s not enough to assume your child isn’t capable of bullying, or that it’s not in their character. When you assume your child knows better, you’re putting your child at risk of being a bully. It doesn’t take much for children to gang up on someone for something- anything. Children partake in making fun of others for numerous reasons. Sometimes that person feels bad about themselves, or is reflecting learned behavior. Whatever the reason there is absolutely no excuse for bullying. Make it clear to your child that bullying does not just consist of name calling. It’s isolating someone, singling someone out, treating someone with little or no respect, or making someone feel less. And lastly bullying is absolutely unacceptable behavior.

    The overall goal of disability awareness is to promote inclusion and educate the public on people with disabilities. We still as a society have far to go in disability acceptance and inclusion. You are your child’s biggest role model. All of this starts at home with you. Learn the facts and talk to your children about disability awareness.